GCA, tinnitus etc

[CavalierKC3]

has anyone been diagnosed with pulsatile tinnitus, to do with GCA. I have buzzing in one ear 24/7 which comes & goes with vibrations in head. I have now developed hearing my heart beat in the same ear, wondering if it’s all connected & serious

[DorsetLady PMRGCAuk volunteer]

Ear problems can be part and parcel of GCA, see this link, so you do need to discuss with your doctor -

link.springer.com/epdf/10.1...

[CavalierKC3 in reply to DorsetLady]

well, I have just contacted doctors surgery. Receptionist says because I have had buzzing etc in ear for quite some time the new sound of hearing heartbeat is not considered serious enough to be able to have a telephone conversation, must wait until May 14 for routine appt with a doctor

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

It’s that a considered medical decision?😳

[CavalierKC3 in reply to DorsetLady]

don’t understand what you mean. The receptionist won’t give me a telephone conversation, says they are for emergencies only & next appt with doctor is May 14

[PMRpro Ambassador in reply to CavalierKC3]

I think, like me, DL is questioning a MEDICAL opinion being expressed by a receptionist.

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

As PMRpro has said, I was questioning receptionist ability/medical knowledge on whether you need to speak to GP...

[Iamfedup in reply to CavalierKC3]

I have had tinnitus for many years. At one point I also started with pulsatile but it didn’t last for long

[65_women in reply to CavalierKC3]

Tinnitus kidney weakness

[CavalierKC3 in reply to 65_women]

What do you actually mean

[SheffieldJane]

I had the symptoms you describe when I was on high dose Pred, once when PMR was diagnosed and 4 years later when GCA/LVV was diagnosed. The heartbeat pulsing was there from the start. My Rheumatologist wasn’t too concerned, she’s pretty good.

[Sophiestree]

I have LVV and suddenly got a numb face on the right side only (most of my symptoms pre diagnosis were right sided) and then got tinnitus. Doctors did various checks face to face and that was it. When I saw my new rheumy he suggested trigeminal neuralgia but I know it's not that as it is not painful at all, just a strange sensation. The tinnitus is something I have not had before but seems worse at different times. And if there is a loud noise it's horrible. I've just got used to it now. If I touch my face I'm reminded but it's lessened over the months.

[PMRpro Ambassador]

Pulsatile tinnitus is, by definition, aligned with your heart beat and that is what it sounds like. It can be caused by GCA. If you have a GCA diagnosis - it needs checking out.

I would be calling the practice and asking for a conversation with the Practice Manager since I have no idea what gives a receptionist the right to make that sort of decision - which is akin to telling a patient that the angina they have had for years means the change to the chest pain isn't urgent. Don't mind it being classed as non-urgent - I DO mind it being the receptionist who makes that decision. A phone call from a doctor would do.

[CavalierKC3 in reply to PMRpro]

receptionist says not allowed phone call with doctor they are for medical emergencies only. I have had buzzing, visual disturbance, vibrations in head for a long time. Diagnosed with gca in august 2022 am now nearly off steroids. The heartbeat sounds in same ear have started recently

[PMRpro Ambassador in reply to CavalierKC3]

It probably isn't too much of a problem - but it is NOT the receptionist's place to make that decision in my opinion.

[CavalierKC3 in reply to PMRpro]

that is what you get at our surgery, told receptionists are trained to ask the right questions & get you to right clinician

[PMRpro Ambassador in reply to CavalierKC3]

If they say so. Hope they are good at it because one day they will slip up and someone will die.

[Rugger]

I had those symptoms before I was diagnosed with PMR (& later, GCA-LVV). I reported them to my GP who wondered if it was low blood pressure. That was monitored for a week and was 'normal'. About 3 months later, the classical signs of PMR surfaced and I was started on prednisolone. The pulsatile heart beat in my ears disappeared, but I do still have 'normal' tinnitus 😱.

I feel it was part of the GCA and my Rheumatologist thinks I may have had GCA from the start, even though the initial diagnosis was PMR, with GCA confirmed 3 years later.

As you have GCA, do you have a Rheumatologist - with a Helpline to Nurses? Compared with some of us, you haven't had GCA for so long - if you are "nearly off steroids", do you think your dose could be too low?

Alternatively, do you, by any chance, wear hearing aids and could discuss this with an audiologist?

I agree with what PMRpro and DL have to say about your GP's surgery!

[CavalierKC3 in reply to Rugger]

No hearing aids. Diagnosed with GCA in august 2022. Started 50 mg of Prednisolone with a 2 year taper so finish next month. Also have a lot of pain in left leg, buttocks, lower back ache & stiff aching neck daily. Told definately not PMR it’s osteo arthritis & need exercise & mild painkillers.

[PMRpro Ambassador in reply to CavalierKC3]

The two year taper is a theoretical approach - GCA rarely resolves entirely in only 2 years and you aren't aiming relentlessly to zero but to the lowest effective dose at any given time. If you have pain in those areas I would not be surprised if this were PMR relating to your GCA diagnosis and the idea that it is OA is absolute rubbish. Who came to that conclusion? Your GP surgery?

Do you also have pain in the right side or is it very definitely only the left side? Like Rugger, I think your pred dose is probably too low.

[CavalierKC3 in reply to PMRpro]

Muktyar was my rheumatologist & his taper is 2 years. He is adamant my pains etc are not PMR related. My gp got me X-rays on knees & hips which showed mild degenerative changes so all say I have osteoarthritis. I was referred to gym for exercises , but not getting much improvement yet, today rather painful have just taken painkillers. The pain, stiffness is always across lower back, left leg, some in right buttock & thigh & pain/stiffness in neck. I sent for FlexiSEQ & have nearly finished one tube but not seeing much help yet. One way & another at my wits end, feel very tearful today & getting horrible heartbeats

[PMRpro Ambassador in reply to CavalierKC3]

Ah yes, we know about him. He's wrong. You need a different rheumy.

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

Sorry to hear you are feeling so low -and yes between GP and Rheumy you are between a rock and a hard place.

A virtual hug on its way 🌸

[Sophiestree in reply to CavalierKC3]

when you have your appointment on 14th May can you perhaps ask for a new referral. I am sure people on here can suggest a few names for your area. I have done that and feel so much happier about everything.

[CavalierKC3 in reply to Sophiestree]

hi, later yesterday I contacted 111. Took details & told report would go to doctors & advised I was seen within 3 days. Just phoned surgery & being seen by a locum who knows nothing about me on Monday morning.

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

Shouldn’t be put off by locum not knowing you -they may look at things with an open mind and new eyes.. not always a bad thing.

[Sophiestree in reply to CavalierKC3]

I agree with DorsetLady. Locums can be the best, they have an open mind and often look at things differently. My surgery is a GP training surgery and I am happy to get them as they look at everything never assume. Think about what you want to say and that you don't feel heard. Go prepared you might be pleasantly surprised. Good luck.

[PMRpro Ambassador in reply to CavalierKC3]

Locums have a lot of advantages - no preconceptions for a start.

[SnazzyD]

I had tinnitus with some hearing loss develop 18m before my GCA diagnosis in my worst GCA side. During Pred it was loudly pulsatile which reduced with dose (zero Pred Aug 2020) but I was left with it to a certain extent. It has worsened since but comes and goes with what I call a simple tinnitus which is no more than two tones not at the same instant with regular changes. This I can cope with. Sometimes it is more erratic with more than one tone or pitch which is not so good. It goes in phases what makes it worse is poor sleep, illness, stress and I find it gets worse through the summer and eases in the Autumn. This might be allergy/fluid related. I find salt makes it worse. Also, impacted ear wax makes a difference too.

I have had a CT to check for neuroma and other issues. I was also referred to the tinnitus clinic which was for education and support. This arose when a few episodes of debilitating vertigo with increased hearing sensitivity kicked in last year and for the first time since GCA I said tinnitus was bad. They are on the fence regards Meniere’s now but their door is open.

I would say it is worth getting a simple check of your ears by the GP to see if wax or visible fluid behind the eardrum are present. Sometimes people get a painless perforation and not know it. Sometimes flying/diving can cause pressure damage that doesn’t resolve properly or a blocked eustacian tube due to allergy, post nasal drip or lingering viral effects. You could get a good hearing test too. Quickest is going somewhere like some Boots branches if you can’t get in with a nurse if they do them at your surgery.

Likely nothing to worry about but check if there are easy solutions and perhaps have other things ruled out. The GP could refer you on if needed or simple measures don’t help.

[Predderman2020]

me too - left ear - worse after a couple of glasses of wine. And at night, lying down in the quiet. I assumed it is Pred, or age (68 and 3/4).

[Richmond162]

Hi. I too had that and I have PMR and GCA. Awful to hear heart beat all the time. Turned out I had glue ear and ended up having a grommet fitted for a year. Had it removed this year and no more problems. Fingers crossed! So it could be that, but worth checking with doctor. Kind regards. Julie.

[Saintmalo]

yes - I totally understand. This happened to me bout 10 months ago. They have given me a hearing aid - which I don’t really need!!

[oscarina]

Have had PMR since 2019 and greatly decreased symptoms now after four years of Pred and now off completely but on celecoxib d/t MD strong encouragement to stop Pred before cataracts worsen a lot, but have had UPT for eighteen years with consults in Boston, Chicago, and Philadelphia at specialty clinics for vascular tinnitus which is what UPT is referred as in the states. Yes, heartbeat noise is much louder sometimes but background "angry crickets" noise is always present, docs say to learn to live with it or have intracranial surgery to move the veins around somewhat and take out a piece of dehiscent cartilage or cut the audonomic nerve which is no hearing in that ear. So just living with it and listening to Brian Cox lectures as I go to sleep is my preference to drown out the noise. You may want to have your locum rule out any DVM or AVM as etiology of your UPT, but as others have suggested the GCA is more likely the cause rather than a serious comorbidity. Other information on website about UPT is WHOOSHERS for supplemental info.

[PMRpro Ambassador in reply to oscarina]

Once cataracts are there there is absolutely NO justification for using them as the reason for stopping pred. They are easily dealt with and won't recur once done - but stopping pred won't make them regress. I'd far prefer to be on pred than celecoxib long term - and that appears to be the opinion of most of the doctors here.

[Saintmalo]

Hi - I have experienced exactly the same - I know that this doesn’t really help you. Sorry. Any advice gratefully received. Please!